Lupie Bones

I actually had a chance to speak to my doctor myself by telephone, and he said that my foot is fractured, but only a small fracture. He wants me to go in for an MRI to check to see if there's anything else going on with my foot. He also instructed me that walking a half-marathon isn't a wise goal at this point.

I started wondering what sort of other things could be going on? My doctor said, "thinning bones". In my research, I found that people with lupus are susceptible to osteoporosis, and there are two reasons for this: One, inflammation accelerates osteoporosis, and two, prednisone accelerates the process. The book I read about this recommends that all women with SLE should take calcium. I bought the pills, but they are too big to swallow. I have esophageal motility issues. I think I'll take Tums. Those have calcium, and they're chewable.

Another complication of SLE can be Osteonecrosis. Osteonecrosis happens when there isn't enough blood supplied to the bones and the bone tissue dies. That sounds fun, doesn't it? This condition is associated with the use of prednisone, as well. This is the issue that's diagnosed with MRI scans. I'm just a little bit concerned about this one because it mentions that this problem is commonly seen in the hip, and I've been having pain in my hip for over a year. I mentioned it to my rheumatologist, and he said, "arthritis". I told myself that if I turn out to have a problem, I'm switching rheumatologists.

I hate the uncertain. Whenever I'm in the process of waiting for the results of medical tests, I do nothing but research and theorize. It helps me worry less, believe it or not.

Not Walking

Okay, I think it was about a week ago that I got the bright idea that I was going to walk a little bit more each day until I was able to walk a marathon. I figured what harm could that do since walking was one of my allowable exercises? The first day I went out, I was in a bit of pain, but what's unusual about that, right? I have lupus. Life hurts, so I just deal. In particular, my left foot was causing me tremendous discomfort. In general, I usually have pain whenever I do any sort of exercise, so I figured that with time, it would get better. The second day, the pain got worse, and then the third day, my foot turned purple.

I thought, well that's a good sign that there's something wrong. I decided it was time to go see my rheumatologist. When I told him what was going on with my foot, he looked at it and said, arthritis. Okay, now we go into a sidebar about being black and going to the doctor. People go through all these surveys, statistics, and theories about why black people don't get as successful medical treatment as whites. They say that it's social, economical, blah, blah, blah, but do you honestly want to know what it is? White doctors have a hard time recognizing unusual symptoms in black people. I honestly believe that my doctor couldn't see the discoloration in my foot. Before I was diagnosed with lupus, I first noticed the butterfly rash on my face. I went to the doctor, and he said he didn't see it. I went to two other doctors and they said they didn't see it either. I asked my husband if he saw it, and he said, "no." I was starting to think I was crazy until I went to my therapist, and I walked through the door, and she said, "Oh my gosh. What's wrong with your face?" I said, "You see it? She said, "Katerina. It's as plain as day. You have a red mask sitting right across your cheeks." I wanted to kiss her.

Anyway, my rheumatologist said he didn't think there was anything wrong with my foot, and there was no need to x-ray it. I was dubious. I've been suffering from arthritis for years, and this didn't feel like arthritis, so I called my primary care doctor. My primary care doctor looked at my foot and said that it didn't look that unusual to him. He suggested that I may have sprained it, and told me to go home and put ice on it. He said that he would x-ray it and call me on Monday to let me know.

When I got home from the doctor, my son said, "Hey Mom. Your doctor called. He said your foot is fractured and that you needed to go in on Monday for an PSD, MND, or something." I responded, "An MRI." He said, "Yeah that." I said, "Are you sure he said it was broken?" My son is bipolar, schizophrenic and ADD, so in theory, the doctor could have said anything. It's possible the doctor didn't call at all, and my son is having a psychotic break, but not very likely. But my son responded, "No. He didn't say it was broken. He said FRACTURED." I love my son. "Anyways Mom. He said that he thinks there's something more going on than a fracture and you needed to stay off it and get that MRI thing, so go to bed and tell me to bring you stuff."

So it looks like my walking a marathon is put on hold for now. Quite honestly, I never really expected that I'd have the ability to walk a marathon. It was just a nice little goal to set for myself. In my mind, I'm this fantastic person, who does all these amazing things. I always like to live my life like I'm working toward being that fantastic person.

Lupie Hubby

I just finished reading this article about a man whose wife had lupus and breast cancer. He speaks of how she would tell him to go off and live his life because she didn't want to hold him back.

I have that feeling all the time. When Geoff and I first married, we used to do a lot of things together. Our two favorite activities were camping and going to the movies. Geoff and I really love movies. On Tuesdays, we used to go to the theater for two dollar Tuesdays and stay there all day watching movies.

Now, with lupus, I can barely sit in the theater for a ninety-minute movie, so I often beg off. Geoff really loves movies, so he'll often go without me which is fine. He usually takes our daughter. It's good quality time for them.

I often just rent movies these days and have a movie night at home. I like that a lot better than going to the movies. Although, I do miss the experience of people talking at the screen and on their cell phones in the middle of a movie. What I miss most is the sound of a three year old crying in the middle of a Rated-R slasher movie. Maybe I should see if my four year old god-daughter can come over when I rent the double feature Saw and Saw II?

I do plan on going to the movies on Tuesday to see Superbad. My work is having a movie day. I have a comfortable chair that I usually take with me to the beach. I think I'm going to try bringing it to the movies. I thought I'd chance the pain because I hear that Superbad is really funny, and Lupies need lots of funny.

Quitting is okay

When you deal with something chronic like lupus, you will often hear people say, "Don't quit. Don't give up." Forget that noise. I quit all the time. What I find that I need to do all the time is try.

A few days ago, I decided that I'm going to train to walk a half-marathon. I found this to be a pretty reasonable unreasonable goal. Walking is one of the exercises I'm allowed to do, and all I have to do is walk just a little farther one day to the next until I reach a half marathon length. How hard can that be? Well, when you have joints that don't want to work many mornings out of the year, it can be pretty hard. Actually, it hurts to walk right now, but with lupus, you have to keep moving, and I have to get from one place to another somehow. I guess I can try swimming? It may be that I have to give up on the walking a half marathon goal somewhere along the way, and that's okay. I'll just try something else. So quit all you want, just don't quit trying.

Done Pouting

Well, I feel a bit better emotionally than I did yesterday. I went to the dentist and I now have a temporary crown. My dentist is great. I used to hate going to the dentist before I had this one. Cleanings were always so painful. I swear I had a dental hygienist who set out to make it hurt on purpose.

Then I found this dentist. The first time I went to his office for a cleaning, I said to the hygienist how I hated cleanings because they were painful, and she said, "You know. We can put numbing gel on your gums so it doesn't hurt." I wanted to kiss her. I can't believe no one ever suggested that before.

If you're a lupie who shies away from the dentist because of the gum pain, ask about getting the gel on your gums. It really helps. It's important that we go. As the link I provided yesterday shows, we are susceptible to gum inflammation. We need to take care of our mouths.

Lupie Teeth

I had a tooth start to break away on Saturday. That will be the fourth tooth in a year. I have an appointment with the dentist this afternoon. I always have things like this happen to me over the weekend. My dentist would have taken care of it on Saturday, but I wasn't in any pain, so he scheduled an appointment for me to go in today.

I have to say that I'm pretty upset about this. I'm one of those people who does everything I'm supposed to do, which means that I floss at least once a day. My husband tells me that it would be worse if I didn't do these things. He's probably right, but that's little comfort when you're 38 going on 60. I have always taken good care of myself. I shouldn't be feeling this old. I don't drink. I don't smoke. I've never even had so much as a cup of coffee, and I feel like my body is falling apart. I really hate this.

Okay, that's it for my pity party. As you can see, dental care if vital with lupus. You need to take care not to come down with gingivitis or periodontis. Personally, I need to make sure that my mouth is clean in order to prevent yeast infection in my mouth. That stuff spreads down my esophagus faster than a jet plane. When that happens, that really isn't fun.

If you're interested. Here's a link on dental concerns and lupus.

Lucky Lupie

A few days ago I went to see my doctor about the chest pains I've been having and he suspects that I'm having problem with GERD again and he doubled the dosage of Nexium. I pointed out to him that my insurance doesn't pay for Nexium. He didn't seem to care. Pretty much said that was beside the point and I needed it. That prescription change has likely upped my monthly Nexium bill to $500, unless I get some deal for buying in bulk. The things is that my doctor is right. I do need my Nexium. Four years ago, I was in pretty serious shape, and the Nexium helped me get back in order. I've tried going without it, and I just relapse. I really don't want to risk going without it again.

This means that I will suck it up and pay the extra money. I feel lucky that I'm able to work, and I can afford to pay for my medical care. I know that there are people with lupus who constantly struggle with ways to make ends meet to not only feed their families but to pay for much needed medical care as well. I remember those days. I had long, poor stretches during my childhood into my early adulthood. I spent many days in County hospitals and free clinics.

Thinking about those times today made me want to put together a list of places that provided no-cost and low cost medical care across the country. As I was working on this list I came across a site that had a far more comprehensive list than I can ever hope to put together, so I'll just link you up with that.

Inspiring Lupie

Yesterday I read an article online about Salimah Mussani. She is a woman with lupus who just won the 2007 Canadian PGA Women's Championship. Isn't that the coolest thing? Normally, people with lupus are told that they can't participate in activities that expose them to sun and heat, but Salimah Mussani wasn't going to stop playing golf for that. According to the report, she plays under an umbrella and carries a lot of water with her.

It got me to thinking about all the things I don't do because of lupus. I've been wondering about how I'm going to finish my degree and maybe go on to get a second degree. I had come to accept that maybe it isn't possible the way things are now, but then I read about a 94 year old woman who just earned her Master's Degree.

Reading about these two women made me realize that nothing is impossible as long as you're still above ground and trying.

Time to Solve the Mystery

Last week, I went into the emergency room with chest pains. This is not unusual for me. I have chest pains all the time, but I'm told to go into the emergency room if the pain is unbearable or if it lasts for a long period of time. I decided to go in because I was having two types of chest pains running concurrently. I had a crushing feeling in the middle of my chest accompanied by a stabbing pain on the left side. I've had both pains individually, but never together, so I decided to go in.

I was really embarassed because the doctor in the emergency room was really cute, and when he came in, he touched my hand, and I completely forgot why I was there. I'm sure if a black woman, born in Los Angeles had the ability to get the vapors, I would have gotten them then and there. Then I came to my senses and thought, "Oh yeah. Chest pains. Husband in waiting room. That's why I'm here." I felt like such a twelve year old.

Anyway, he tested me, said he didn't see anything emergent and told me to follow up with my doctor. My doctor thinks that it's my reflux acting up again, and he doubled my Nexium. That's the Nexium that my insurance company isn't paying for, by the way. He also has me going in for an echocardiogram tomorrow morning. Fun times!

With lupus, chest pains can mean an assortment of things. My doctor is performing the echocardiogram to cancel out pericarditis. One condition that's common among people with lupus is plueritis. That's when you get inflammation in the lining of the lungs. It's always good to check with a doctor when you're having chest pains. You just never know.

Lupie Poop

For the past week, I've felt really obsessed with my own poop. It's because I'm going to my rheumatologist today, and I know one of his questions is going to be, "How are your stools?" And I want to be ready for the answer. Before lupus, I paid very little attention to what came out of me, and that was pretty much by choice, but my doctor at this point has reinforced that it's important to look at my poop.

Because of the ulcers I'm prone to get and the meds I'm taking, my poop is supposed to be a good indicator of how I'm doing. But because of my years of poop observance, I've been able to come up with this nice poop color scale that I'll happily pass on to you.

Black--bleeding in upper GI tract. Call doctor.
Red--Lower GI bleeding. Call doctor. (I get this sometimes, hemroids.)
Yellow stools -- For me, this means too much Imuran.

For those of you who are truly worried about the poop that comes out of you, here's a site from about.com.